SI pain

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

does AS always have SI involvement?  So someone that has no x-ray evidence does not have AS?  59 yo female At this age Rheumatologist says if I have AS, this joint would be fused.  "Minimal degenerative changes" Everything else is positive for AS, just no SI involvement.  Thoughts?

0 likes, 11 replies

Report

11 Replies

  • Posted

    Every research paper I've read quotes 100% have sacroiliac involvement. I have been under care of rheumatology for 6 years, 5 of them I was incorrectly treated for polymyalgia. Last year I mentioned waking 2nd half of night with severe rib and pelvic pain, that eased when I got out of bed and moved. X-rays taken of SI joints showed fusion. I apparently have had this 15-20 yrs, and had put my severe episodes of back pain down to my nursing career.

    When you say everything else is positive for AS what do you mean. The gene is not diagnostic, about 10% of people carry the gene and only about 8% will go on to develop AS. It is important to get the correct diagnosis and correct treatment. I have been on steroids 5yr which caused 3-4 stone weight gain, which had I been diagnosed correctly I would never have started. Good luck, I understand the frustration needing answers 😁

    Report
    • Posted

      Pos gene, 20x hsCRP, family hx, bridging syndesmophytes via MRI, steroid responsive... thought we had nailed it (both husband and I are RNs). But age, sex and minimal SI changes.  Have no clue what they will finally figure out.  Happy prednisone works, but can't be on that forever!  Frustrating is putting it mildly!

      Report
    • Posted

      I too am an RN with 33yrs experience. When my first Rheumy diagnosed PMR I was convinced they were right. Like you I had a very good response to Prednisolone, except when I reduced below 10mgs, then pain and stiffness worsened. If you have bridging occurring it does sound like a spondylarthropathy. I eventually was diagnosed in Leeds (I live in Kent) by an expert who works for NASS, I was 51 when diagnosed, but was told I have had it around 20yr. My ribs are fused to thoracic spine so I have no chest expansion, my neck is fusing, one of my SI joint is fused. You could ask for an opinion from one of the NASS advisors. If you work in the NHS you could email them directly with a short summary, asking if they would be happy to offer opinion. My GP was more than happy to send me out the area, as a female at 52 I was very atypical. Good luck ☘️
      Report
    • Posted

      So....this may not be helpful at all but I have read many articles that state early AS is undetected on xrays. I thought they did some sort of metal test things magig that is more accurate than an x-ray. Ha can you tell I'm also trying to convince my Dr. Of my AS that's run in my family for years but she is not wavering at testing for the gene. But my Si joints aren't fused so "it can't be that"!!!! FML! 

      Report
    • Posted

      If you have nothing show up on X-ray then they should proceed to an MRI. It can show inflammation as well as changes to the spine, which are not showing up on X-ray yet.

      If you have inflammatory back pain, which classically improves with mobility, worsens with rest and causes morning stiffness of usually an hour or more, then your GP has a duty to refer you to a Rheumy for further investigation. GPs can only order simple MRIs, Rheumys order a STIR sequence which specifically looks at inflammation. Good luck

      Report
    • Posted

      TY.  Just this week I have had a body scan.  It showed sacroillitis.  Which was not seen on plain films!  Will see Rheumy next week.  I would never venture to suggest he will come to the AS diagnosis.  But, given my other findings I'd be surprised if he didn't come to that conclusion!  Hopefully getting on a steroid sparing drug soon.  So tired.  Long gone are the days that I woke up refreshed and ready to tackle the day!

      Report
    • Posted

      I have sacrolitis as well which showed on the pelvic MRI. I also have pain in my hips, shoulders and chest. I was diagnosed with undifferentiated spondyloarpathy. I have been on Enbrel for 8 weeks now. It has helped with the stiffness. Rheumatologist may change it to humira.
      Report
    • Posted

      What kind of side effects have you had on Enbrel?  Did you notice improvement right away or did it take a bit?
      Report
    • Posted

      now, I had a nuclear study, a body scan.  They inject this radioactive stuff then scan head to toe 2 hours later.  That study will show inflammation. (I have difficult time with MRI's, terribly closterphobic and can not lay flat on back.  Last one they did was 5 years ago, and I had to be intubated!). At age 59, nothing showing on plain films.  But lit up like Christmas on the body scan.  Push for the gene marker.  But remember, positive or negative, it's just a piece of a big puzzle.  You could be positive and not have AS, you could be negative and have AS.  Push for either a body scan or MRI.  They need to put the pieces of the puzzle together before they can come to a diagnosis.  And even then, it's an educated guess.  (Usually a very educated guess). Be your own advocate!  Good luck on this journey!

      Report
    • Posted

      I initially injected in the thigh. But it was less painful in the belly. I developed an itchy rash at the injection site. So what I did, which helped a lot, was take 2 Benadrly one hour before the injection.

      It took about 3 weeks for me to notice anything. It helped with the stiffness but I still have pain. I am starting to lose hair. Plus I am super tired. Even with these side effects I still feel better taking it.

      Report
  • Posted

    Yes, it is AS.  Right from the Rheumy's mouth!  Glad I'm on the right road now.  Will start Enbrel next week.  Anyone share their experience on Enbrel?

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up